Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Tuesday, November 11, 2014

Three years ago today on November 11, 2011, you immediately brought so much joy into our lives and into our world. Little did we know at that time, you'd grow up quickly and make a major impact on the lives of countless others throughout the world. Thank you for gracing us with your presence and changing our lives and our world for the better.

Love,

Mommy & Daddy

If you feel so inclined, please consider making a donation in honor of Avery's birthday towards helping families battling SMA and finding a cure for SMA.

Please share Avery's story by updating your social networks, e-mailing all of your contacts, talking to your friends/co-workers, and definitely tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing. If we can help save a few of Avery's friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will continue to be fulfilling in stature.

Saturday, August 2, 2014

Please share Avery's story by updating your social networks, e-mailing all of your contacts, talking to your friends/co-workers, and definitely tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing. If we can help save a few of Avery's friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will continue to be fulfilling in stature.

We're not sure why August was selected as Spinal Muscular Atrophy (SMA) Awareness Month, but we are certainly happy SMA has it's own awareness month! With that said, SMA is a 24/7/365 disease and it does not take off the other 11-months of the year. So while this is officially SMA Awareness Month, we'd encourage you to continuously educate yourself and others about:

Don't forget to share Avery's story and continue to follow the stories of children & families currently battling SMA! The more people aware of SMA the less likely a family will receive a diagnosis of SMA and the more likely there will one day be a cure for children currently battling SMA!

Friday, April 25, 2014

We are extremely excited to share with everyone that enrollment is now open for Dr. Kaspar's Gene Therapy clinical trial (which your donations in memory of Avery went to via Sophia's Cure Foundation﻿)!

Thank you Dr. Kaspar, Sophia's Cure, everyone at Nationwide Children's Hospital﻿, and any other individuals and organizations involved for their hard work and role in making this trial available to children with SMA and their families.

And a special THANK YOU to everyone who donated any amount towards this trial in Avery's name! Once matched by Nationwide Children's Hospital and the generous anonymous donor, your donations through Sophia's Cure for this trial amounted to $1.5 million dollars!PLEASE CONTINUE SPREADING AWARENESS about Spinal Muscular Atrophy (SMA)!!!

Monday, March 10, 2014

Many of you have sent us messages asking for updates about our family and Avery's little brother Carter. We want to thank you again to for loving Avery and continuing to care about our family. Below are some recent photos of Carter and don't forget, if you haven't already done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them because you never know how it might positively impact their lives or this disease.

It's amazing to us how much Avery & Carter look alike in their profiles.

Avery at 5 1/2 months old.

Carter's a happy morning (pretty much all day) baby just like his big sister!

Just like Avery, it doesn't take much to get Carter to smile big for you. The following photos were taken about a month ago and all it took was mommy's comfortable shoulder and daddy's funny facial expressions and noises.

We just wish he liked traveling in his car seat more.

He smiles big and promotes big smiles in return :-)

And what's life without a little laughter every now and then?

To learn more about SMA or to make a donation towards research for a cure, please go to either of the following non-profit websites:http://www.fightsma.org/

Tuesday, December 3, 2013

Avery officially became a big sister to an SMA-free baby brother on Saturday, November 23, 2013. We are extremely proud to welcome Carter Bryant Canahuati into our family while helping Avery scratch one more item off her list (Become A Big Sister)!

Thank you again to everyone for loving Avery and continuing to care about our family. If you haven't done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them...you never know how it might positively impact their lives or this disease.

To learn more about SMA or to make a donation towards research for a cure, please go to either of the following non-profit websites:http://www.fightsma.org/